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Stem cell transplant 'game changer' for MS patients
Doctors say a stem cell transplant could be a "game changer" for many patients with multiple sclerosis. Results from an international trial show that it was able to stop the disease and improve symptoms. It involves wiping out a patient's immune system using cancer drugs and then rebooting it with a stem cell transplant.
Louise Willetts, 36, from Rotherham, is now symptom-free and told me: "It feels like a miracle." A total of 100,000 people in the UK have MS, which attacks nerves in the brain and spinal cord.
There are just a few problems, however: The experimental procedure is under scrutiny from regulators, the experiment's web site may have overstated the effectiveness of the not-yet-proven treatment, and patients have to foot the bill. Oh, and no one has seen the study yet.
[...] The results reported in the BBC piece are just the preliminary findings. And that leaves a number of questions still unanswered — are these results permanent? What are the risks? Who isn't suited to have their immune system wiped out through aggressive chemo?
The U.S. Food and Drug Administration (FDA) has also flagged some serious issues in the study's protocol. If that sounds boring and bureaucratic, think of it this way: for a few months, the lead investigator somehow forgot to report a number of nasty side effects of the treatment, including chest infection and the worsening of conditions as diverse as vertigo, narcolepsy, stuttering, and hyperglycemia, among others.
One thing we know for sure? It's real expensive. The BBC noted it cost patients £30,000 ($42,000) to receive the experimental treatment, but biomedical scientist and science writer Paul Knoepfler, who has been following the trial since last year, says it ran some patients between $100,000 and $200,000.
Related: Low Vitamin-D Genes Linked to Multiple Sclerosis
Scientists Identify Potential Inhibitors of Cancer Metastasis and MS
Risky Stem Cell Treatment Reverses MS in 70% of Patients in Small Study
(Score: 2) by cocaine overdose on Thursday March 22 2018, @05:37AM (2 children)
What a depressing disease. I just finished watching a nice girl deteriorate into death for years with MS. Her parents and brother had to invest a lot of emotional, mental, and capital resources into taking care of her, and then she's just gone. There's not much more to say, except it looked like it sucked. My mental process went a bit more like "well, shit's fucked might as well do it my way," but with MS you don't have the freedom to say "fuck it, let's go skydiving with an LMG over D.C."
Also calling NotSanguine, if these user tags work: FDA fucks up once again. If you want more proof, try looking through their "open database," as it's labeled. But the ingredients on the tin are wrong and there's no pull tab. And when you open it, there's another fucking can inside!
And this treatment is likely a sham. Knowing a lot of people with terminal debilitating illnesses, they go desperate, sometimes full on delusional, and will try anything at all that could work. Lyme disease is one that comes to mind. There's really nothing to be done about post-lyme disorders and I've seen "Lyme Disease Doctors/Specialists," drain people dry of their money and their insurance rates. Years of IV antibiotics, expensive and obscure supplements (not your run of the mill GNC/CVS shit, I'm talking specifically breed and reduced THC tinctures, various mixtures of ground animal organs, many in the hundreds of dollars for a month's dose, and mitochondrial gene therapy) that likely had kickbacks involved, and liberal prescription of various class I substances (though at that point, the medical community agreed there was no treatment besides improving quality of life).
It probably won't fix MS. Most of the shit in the medical sphere is slow to progress and incremental. Anytime you hear "breakthrough," it's definitely a scam, there's no "maybe."
(Score: 3, Informative) by c0lo on Thursday March 22 2018, @06:56AM
Sometimes it is.
E.g. Sulfonamides [wikipedia.org] (the ones that indirectly triggered [wikipedia.org] later the creation of FDA)
https://www.youtube.com/watch?v=aoFiw2jMy-0 https://soylentnews.org/~MichaelDavidCrawford
(Score: 0) by Anonymous Coward on Thursday March 22 2018, @07:52PM
She's in her late 50s having had it since her teens or twenties. She still walks every day, even though she shuffles like an old lady and has for at least 20+ years. Sad part is only one of her kids really spends any time with her anymore and her husband spends a lot of time gone, leaving her unattended in a house that could be fatal for her to enter or exit (the inside is fine for moving around, but it is elevated and has staircases for the front and rear porches that a tumble down could prove fatal.)
Point being: Just like ALS, some people can manage to live with it well into the latter years of a normal lifetime.
(Score: 2, Interesting) by anubi on Thursday March 22 2018, @06:55AM (8 children)
I'd like to know where they get off charging ones entire family assets to become a human guinea pig? Its experimental medicine.
The unfortunate soul finding themselves in the grip of these "uncurable" maladies - of no fault of their own - are even expected to foot the bill?
All this time, I was thinking this is why we have publicly funded research. Teaching hospitals. And the like.
Trying to place the economic burden on the unlucky to me is a terrible thing to do.
Now if you want liposuction and plastic surgery, those are not medical... they are cosmetic ( unless congential birth defect or the like ).
We desperately need the knowledge and experience gained by treating the afflicted. To me, that alone is worth the price of public funding of medical care.
Although I am sorely against using healthy animals to afflict with a malady then practice trying to cure same, if some unfortunate being becomes unlucky enough to get it, do whatever you can to help that person, and from that learn anything you can. Every patient becomes yet another stepping stone in acquisition of knowledge of how to deal with these things.
What was learned treating any one of us will benefit all of us one way or the other. Even the multibillionaire will benefit from the skills learned by treating a homeless person who had the same problem.
Refusal to treat is tantamount to tossing your lab rat instead of learning what you could from it.
My take is to give everyone the best treatment available, and LEARN. The most precious thing we have is our wisdom and knowledge.
"Prove all things; hold fast that which is good." [KJV: I Thessalonians 5:21]
(Score: 2) by c0lo on Thursday March 22 2018, @07:05AM (2 children)
FTFY
And if one of these research turn out positive, it is taken by big pharma, tweaked a bit and patented.
https://www.youtube.com/watch?v=aoFiw2jMy-0 https://soylentnews.org/~MichaelDavidCrawford
(Score: 0) by Anonymous Coward on Thursday March 22 2018, @12:16PM (1 child)
Your idea is that people are getting scammed because the gov isnt giving the scammers enough money?
(Score: 0) by Anonymous Coward on Thursday March 22 2018, @12:46PM
What a wonderful idea.
(Score: 2) by c0lo on Thursday March 22 2018, @07:07AM (4 children)
What about the other way around?
https://www.youtube.com/watch?v=aoFiw2jMy-0 https://soylentnews.org/~MichaelDavidCrawford
(Score: 2, Interesting) by anubi on Thursday March 22 2018, @08:10AM (2 children)
<snark>
Hmmm... that's a turnaround! Experiment on the rich guy, learn from his demise, then use what was learned to save the poor guy!
Because the rich guy was the only one who could afford to be the lab rat!
</snark>
"Prove all things; hold fast that which is good." [KJV: I Thessalonians 5:21]
(Score: 2) by c0lo on Thursday March 22 2018, @09:05AM (1 child)
I like it. When does it start?
(grin)
https://www.youtube.com/watch?v=aoFiw2jMy-0 https://soylentnews.org/~MichaelDavidCrawford
(Score: 1, Touché) by Anonymous Coward on Thursday March 22 2018, @11:34AM
Its already being done that way... except for the poor guy part.
(Score: 1) by khallow on Thursday March 22 2018, @05:39PM
Worked for cell phones.
(Score: 5, Informative) by janrinok on Thursday March 22 2018, @09:26AM
The CounterPoint quote is just plain wrong. The trial in the UK was fully funded by the National Health Service. Patients did not have to contribute to the costs of the treatment. What the BBC did point out was that the cost of the treatment was the same as a single years cost to the state for medication in the UK. Patients in the UK do not pay anywhere near the cost of medication than might be the case in, say, the USA. The cost quoted was for the operation to be carried out in Mexico [dailymail.co.uk] at a private clinic.
The risks are real but quoted without context. People die a lingering and slow death from MS. A risk of a 1 in 5 chance of developing cancer or some other problem as a result of the treatment is sometimes a risk worth taking. If you wait for something that has 100% certainty of success with no side-effects then you will never receive any worthwhile treatment. Even a 50% chance of survival is better than having a 100% certainty of a painful death.
Someone I love dearly has MS and she was an early volunteer for the trial. We still have the paperwork explaining what the risks are, what was expected of her, and the associated costs. Unfortunately, after getting through the initial stages of the acceptance procedure it was decided that her MS was at too advanced a stage to be useful to the trial, and her subsequent move to live in France (where the trial was not taking place) meant that she could no longer play a role in the proceedings. A the stage she is now it is a case of watching her die slowly and painfully, and trying to give her as much joy and dignity as we can for however long it takes.
(Score: 0) by Anonymous Coward on Thursday March 22 2018, @03:36PM (1 child)
It seems that installing Linux would be a quicker fix.
(Score: 3, Funny) by DannyB on Thursday March 22 2018, @04:30PM
You are confused sir. Microsoft is not the only MS.
There are TWO kinds of MS. Please try not to get them confused.
1. An affliction suffered by millions, which makes it difficult to do even the simplest tasks.
2. A medical condition.
Please try to remember which is which.
Every performance optimization is a grate wait lifted from my shoulders.